Ethics At the End of Life

Ethics At the End of Life Aaron Kheriaty, MD Assistant Clinical Professor UC, Irvine, Dept. of Psychiatry

Certain and Necessary… “As soon as a person is born, it must at once and necessarily be said: He will not escape death. Of all things in the world, only death is not uncertain.” -Augustine

Social/Cultural Identify current social and cultural attitudes toward aging & dying Influence end-of-life decision making Explore ways to address patients’ fears and concerns during the final stages of life Ethical Outline foundational principles, values, virtues of medical ethics Application to difficult end-of-life decisions Clarify ethical distinctions that may inform medical care for end-of-life patients Objectives

Aging, Death, Dying Current Social and Cultural Trends

Aging Society: Demographics • By 2050… • 45 to 64 years old • increase 40% (61 to 85 million) • 65 and older • more than double (34 to 79 million) • 85 and older • more than quadruple (4 to 18 million) • We are on the verge of becoming a mass geriatric society (unique in human history)

American Individualism Autonomy, self-reliance Cult of youth Anti-aging industry Recent study: fears of aging highest in world’s wealthiest countries Technological control Power to alter circumstances of life External (environment) Internal (our self) Medical advances Longer lifespan Cures for acute illnesses Chronic illness & old age Distance from death Sanitized: out of home (1900) into hospital (2000) Facilitates “denial of death” (E. Becker, 1974) Psychological refusal to acknowledge mortality Medical language (e.g., patient “expired”) Cultural Trends: Modern Western Society

Demographic & Cultural Changes • Taking Care: Ethical Caregiving in Our Aging Society • President’s Council on Bioethics • Due to aging population • Looming crisis of dependency among elderly • Response so far… • Technological, number-crunching • Programs for healthy aging • Medical research for remedies (e.g., Alzheimer's)

Taking Care “In so far as we do approach the topic of long-term care, we worry mainly about numbers and logistics: How many will need it? Who will provide it? How will we pay for it? The ethical questions of what the young owe the old, what the old owe the young, and what we all owe each other do not get mentioned.” -Leon Kass, Chairman

Alzheimer’s: Illustrative Case • Half of people over 85 will suffer some degree of dementia • Alzheimer’s most common form • Increasing incidence due to aging population • Disease symbol of frightening burdens • Old age and dying • Fear of being dependent ourselves on others • Fear of having others dependent on us

Dependency and Disability In an Aging Society

Common fear w/ aging Becoming a burden on others (dependence) Dependency undignified? Life always begins in dependence Preborn, newborn Young child Life often ends in dependence Old age and sickness Loss of capacities 1st Principle: Human dignity & personhood Not something we ‘have’ at some points in our life Remain persons with dignity throughout our whole life Dependence: Life History

Not categorical E.g., like pregnancy Dimensional: Scale of disability on which all fall Matter of more or less Different periods of our lives, different points on scale When we pass from one point to another Remain same individual we were before making transition Do not lose our personhood, dignity, or basic rights Human dignity is given (not granted); can be respected, or violated Dependency/Disability

Modern Psychiatry Typically understands dependence in pathological terms Dependent personality disorder “Co-dependent” couples Modern Philosophy Self sufficiency superior to dependency Moral philosophy emphasizes Individual autonomy Capacity for making independent choices But, emphasis is too one-sided Dependence: Modern Views

ExaggeratedFears of Dependence in Old Age • Failure to recognize • Extent of dependence throughout lifespan • Illusion of total control, complete autonomy • Fostered by technological advances • Individualistic cultural attitudes • Devalue social ties, mutual solidarity • Realities of aging population • May help correct one-sided values • Foster acceptance of care • Encourage social solidarity

Aging, Dependency, Disability • Typically think of disabled as • “Them,” as other than “us” • Special class • Separate “interest group” • Disabled actually us • As we have been • As we sometimes are now • As we may well be in the future

Needs of the Disabled or Incapacitated • We all lie on a scale of disability • Interest in meeting needs not a “special interest” • Interest of the whole society • Interest in promoting the common good • Even severely disabled are not “outsiders” • But rather, weakest or most vulnerable members of our community

Lessons to Learn from Aging/Dying • What do dependent/disabled (e.g., Alzheimer’s) patients have to teach us? • What it means for someone else • To be wholly entrusted to our care • Such that we are answerable for their well-being • Caring for severely disabled: opportunity … • Learn what we owe our own caregivers • Role of proxy and advocate • Speak for those who cannot speak for themselves

Medical Ethics and End-of-Life Decisions Basic Principles

End-of-Life Decisions:Anxiety • Patients/family members often ambivalent • afraid of making wrong decision • Physicians sometimes uncertain • what to do in borderline cases • Case of conversion disorder in ER • Provoked by anxiety of decision, cured by reassurance • Sound ethical criteria can help guide us

Foundational Ethical Principles • Collective medical/moral wisdom… • Should not directly aim at or intend death • of healthy, sick, or already dying person • Sometimes, ethically justified to withhold or withdraw potentially life-extending medical treatments • Even though patient may consequently die more quickly • Is this not aiming at or intending death?

Key Distinction • When we withhold/withdraw treatment • Aim to dispense with treatment, not with person’s life • Need not always do everything to insure longest possible life • Wear helmets when playing soccer • Not allow cars on the road • Our decisions may hasten death (powers limited) • Does not imply aiming at death • Do not embrace death as good in itself

Ethical Criteria: Withholding/Withdrawing • When can person refuse potentially life-prolonging treatment • Without aiming at or intending death? • When treatment judged to be • Useless • Futile: will likely not achieve intended results • Excessively burdensome to the patient • Little expected benefits, high burdens/risks

Useless/Burdensome Treatments • Ethical jargon: “extraordinary” (vs. ordinary) • or “disproportionate” (vs. proportionate) • Refusing useless treatment • Not choosing death, but choosing another sort of life • Refusing excessively burdensome treatment • Not rejecting life as such, but life with added burdens of low-yield interventions • Choosing not death, but one of several possible lives open to us • Even if a foreshortened life

Key Distinctions • “Useless” or “burdensome” • Refers to potential treatment or intervention • Does not refer to value of patient’s life • If I choose not to treat because I believe patient’s life is useless (e.g., to society) or burdensome (e.g., to her family) • Then I reject not a treatment, but a life • Ethically unacceptable

Right question… “How can I benefit the life this patient has?” Answer may be very little, medically Though much can be done psychologically and spiritually Wrong question… “Is is a benefit to have such a life?” Judgments here will be inescapably arbitrary and unjust Physicians not in a position to make such judgments Key Questions

Ordinary/Proportionate Treatment • Not too painful, burdensome, expensive • Reasonable chance of working • Ethically obligatory • Pt has right to this; duty not to reject it • To refuse may imply suicidal intention • Example: psychiatric consult • Otherwise healthy young patient • Refusing insulin injections • Depressed, did not want to live (suicidal intent)

Extraordinary/Disproportionate • Excessively burdensome or useless • For given patient in particular circumstances • Acceptance/refusal prudential decision • Can justifiably be withheld or withdrawn • Does not imply • doctor’s intention to kill • or patient’s intention to die

Ordinary/Extraordinary • Judgment relative to • Individual patient • Particular circumstances • Not just feature of treatment itself • Same treatment can be proportionate in one circumstance, disproportionate in another • E.g., dialysis • Young ARF patient • vs. end-stage cancer patient

Food and Water (Nutrition and Hydration)? • First question… • Medical treatment, or ordinary care? • If considered treatment, is it… • Always ordinary? • In some circumstances extraordinary? • Useless? • Excessively burdensome?

Treatment Medical Act Medications Surgery/Procedures Care Natural means for preserving life Shelter, Warmth Turning to avoid bedsores Cleaning wounds In most circumstances Food and water is natural means (care) Aim is nourishment and sustenance Aim is not alteration of disease process Nutrition and Hydration: Treatment or Care?

Artificially Administered Nutrition and Hydration • Ethically: considered care even when delivered artificially (e.g., Dobhoff tube) • End is the same: sustenance/nourishment • Feeding tubes not high-tech • Small bore synthetic catheters • Simple to use, inexpensive, readily available • Not new • 1793, physician John Hunter tube fed patients who could not swallow

Refusal of Food and Water: Ethical Considerations • Circumstances where food and water do not attain proper end • No longer provide nourishment and sustenance • True of spoon-feeding or tube-feeding • “Artificial” distinction irrelevant to moral criteria • Useless or excessively burdensome • Example: Patient in process of dying • Organ systems failing • No longer absorb food or assimilate nutrition

Presumption in favor of ANH if patient not actively dying Unless useless or burdensome Typically: ordinary care On par with clean sheets, warm room, bed care Not on par with medications, ventilator, dialysis, etc ANH not useless in PVS when achieves its end Nourishment Sustenance ANH not excessively burdensome in PVS If pt experienced this as burden, then pt would not be diagnosed PVS ANH in Chronic Conditions (e.g., PVS)

I am not advocating… • …That extending life at all costs is always imperative • …That human life must be preserved at whatever cost to other human goods • …That a dying person should not be allowed to die • …That we are obligated to use all extraordinary means to keep dying person alive

I am advocating… • …That we should never aim at or directly intend death of fellow human being • whether by action or omission • …That when we withhold or withdraw extraordinary treatments • We aim to dispense with the treatment • Because the treatment is useless or burdensome • We do not aim to dispense with the patient’s life • Because we judge the life to be useless or burdensome

“Quality of Life” Considerations? • Objection: decision to end patient’s life should be on the quality of her life • Appeals to our empathy for patient • Imagine ourselves living with her disability or in her circumstances • This approach arises from legitimate fears • Fear that a person will be brutalized by technology’s ability to sustain life • Fear of living a life of prolonged suffering

“Quality of Life”: Discriminatory • From an outside perspective, impossible to judge the quality of life of another individual • Introduces a discriminatory principle into the practice of medicine • “This patient’s quality of life is too poor, so we are not going to treat her in the same way we would treat another patient” • Introduces a eugenic principle into society • Historical evidence: devastating consequences

Quality of Life: Slippery Slope • No universal standard to judge quality of life • May start with altruistic motives • But judgments will eventually be determined by • Economic pressures (cannot be ignored) • Political pressures (potentially disordered political system) • Arbiters of “quality of life” • Initially, patient, proxy, or physicians • Eventually, those with economic interests • Decision-making power open to abuses

Eugenics: Recent History • German psychiatrist Alfred Hoche (1920): paper advocating euthanizing severely disabled • “Life Unworthy of Life” (Lebensunwertes Leben) • Phrase commonly cited in pre-Nazi Weimar Republic • Quality of life judgments dictated medical decisions • Physician’s testimony Nuremburg trials revealed • Principle eventually led to gross abuses and atrocities • Medical experimentation • Involuntary euthanasia of those deemed unfit • Both in Weimar Republic and Nazi Germany

Hippocratic Paradigm “Into whatever houses I may enter, I will come for the benefit of the sick…” -Hippocratic Oath • Physicians: placed at service of the individual sick person • Not an administrator of social resources or political programs • Not an agent of state power/authority • Mistake of Nazi physicians

Physician Assisted Suicide, Euthanasia • Intentionally causing death in order that suffering may be eliminated • Sometimes proposed as solutions to burdens of caregiving, suffering, or prolonged illness • Attempt at completely controlling death • Irony: attempting to master very event that finally shows our lack of mastery • Self-contradictory: exercising autonomy in order to eliminate autonomy

Ethics and Human Goods • Human life not merely instrumental good, but inherent good • Not something we “have” or possess • It is what we are: living being • Our life is our person • Without life, we can possess no other goods • Precondition for all other human goods (grounding good) • Including goods of autonomy, independence, rationality, etc.

Human Life • Life is a good • Of the person • Not just for the person • To treat our life as a “thing” that we can authorize another to terminate is • To contradict/destroy every other human good (including our autonomy!) • Profoundly dehumanizing

Summary Our task as physicians… • When possible to cure • Always to care • Never to kill

Legitimate Fears • Rise of medical technology: mixed blessing • People now fear they will be kept alive beyond what they can endure • Basic distinction between ordinary and extraordinary care should be retained • Otherwise will cross lines that lead to abuses and discrimination • If we refuse to give basic care or ordinary treatment, • Then we withhold things that every human person deserves

Physicians Role in Addressing These Fears • We do not live in a society where useless or burdensome care is typically refused • Mentality: one more round of experimental chemotherapy • Do not want to give up hope • But we may unnecessarily subject people to useless “treatments” or excessive burdens • Must educate our patients (or their surrogate) • So that they can understand what they are accepting or rejecting

Limited Wisdom of Advanced Directives • Proponents initially: solution to difficult problems (panacea) • Experience has proven otherwise • Lessons learned • Often ignored by physicians • Good reasons • Difficulty predicting complex medical circumstances • Impossibility of imagining oneself in disabled state

Advanced Directives: Limitations • Best to keep to general principles & values • Particular decisions best left up to surrogate (durable power of attorney) • Surrogate ideally close relative/friend who understands patient • Must work closely with physician, who does not abandon patient/surrogate during this time

What We Learn • We understandably want some control over life • Attempts to completely control life and death can become dehumanizing • Limits to medical technology • Useless/burdensome “treatments” need not be attempted • Never abandon care, even when cure is impossible • Limits to human autonomy • We are not sole author of story of our life • We are dependent rational animals

Aging and Dying “Against our confidence in mastery and control, we need to remember that old age and dying are not problems to be solved but human experiences that must be faced. In the years ahead, we will be judged as a people by our willingness to stand by one another, not only in the rare event of a natural disaster but also in the everyday care of those who gave us life and to whom we owe so much.” -Dr. Leon Kass, Washington Post article

Ethics At the End of Life